A Meeting of the Minds...

After much discussion...both between the doctors and between the doctors/nurses/discharge people AND William...we should be able to go home about 2 this afternoon.

One Year Picture

The following is one of the "1 year pictures" of Laura Beth. Erica did a great job! Our little one is getting so big...

Appetite Burgler

Good Sunday morning to you all, I trust that you all had a wonderful night. Katie is doing okay this morning except she is feeling nauseated. She really wants to eat but she just cant make herself. She asked for a cup of noodles, so I made them for her, but the smell was too much for her to handle. She didn't throw up but she did gag a little. Katie slept pretty well last night, I however did not. Between her having to go to the bathroom and the medicine machines seemingly going off every five minutes it was a restless night. Christa is coming today! Praise God!! I don't know how she did this by herself all these times. She is a very strong woman and a great mother to her children. I thank God for her. She has sacrificed a lot through all of this and deserves a lot of credit for getting Katie were she is. I don't tell her enough but I think she is doing a great job taking care of Katie. I love her more now than I ever have. Please continue to pray for all of us but especially for Katie. That's all I have to say for now. Thanks again for everything.

update

Hey everyone I just wanted to let you know that the chemo started at 1:00 pm. So far so good on the upset stomach. Katie is still eating good and seems to be feeling good. We took a walk around the ninth floor just a few minutes ago to see if the playroom was open, but it was not. It was still good to get out of the room and move around some. We are back in the room waiting on visitors Nana, Pop, and Ashley. The chemo will be ending around 7:30 pm. Thanks again to all of you for everything. Gods power because of your prayers on Katies behalf has made all this progress a reality instead of a hope. I know faith is believing in things not seen, but if you new how bad Katie was then and how good she is now you might think of faith as believing because of what you have seen. Katies recovery from this bacterial infection IS proof that God does exist and that God is in control and always will be. I hope all of you have a great night and may God bless you.

Good morning...no...Great morning

Hello everyone I hope you all had a great night sleep, Katie and I did. Katie woke up about 6:30 this morning wanting to watch TV. Katie is feeling great and is in a WONDERFUL mood this morning. Katie will start chemo sometime today, hopefully this morning. Pray that this round of chemo will clear her bone marrow of cancer so that we can get on with this whole process and get Katie well. We are still scheduled to go home on Monday and are counting down the days. It has only been 11 days but it feels like forever. Katie misses her new big girl bed that we bought her. Her appetite is definitely back she is eating like horse, I hope the chemo doesn't change that. That's all the news I have right now. I hope you all have a blessed day. Remember never take one day with your family for granted because you never know when your family life will be changed. There are lots of things that you can get back but time is not one of them, so slow down and spend time with your kids and spouse and enjoy life.

no more one armed bandit!

Katie has now gotten her IVs pulled out and can use both her arms. She did not like it when the nurse pulled the tape off. She is happy that the IV is gone and that she can use both her hands. I told Christa that she would have been so proud of her daughter, because she was learning how to adapt to not being able to use her left hand. The reason I say that is because Christa is an OT and OTs teach people how to adapt to life when something such as a limb has been taken away. Thanks again for all the prayers and calls. Continue to pray for Katie and for Christa, Laura Beth and I.

New line

Katie is out of surgery, and her new line was successfully put in. Katie is in her room eating, watching TV and doing well. We hope that the IVs in her arm can be removed today because it is really aggravating her. She woke up from surgery pretty grouchy because she was hungry and because she woke up before I got there. The nurses did not have to show me where she was, I just followed her screaming voice. The doctor that did her surgery today was the same one that removed her cancer, so I am confident he did a great job. Christa and I thank you all so much for everything that you have done. Please continue to pray for Katie's health and for her complete healing here on this Earth. I also ask that you pray for me to have patience with these people and that I don't loose my temper with them.

Appetite Return...

Katie has had a good time with her daddy today. They took a nice morning nap and now Katie is eating like there is no tomorrow. She is quickly running out of her stash of Taco Bell burritos! LOL Thank you to everyone who has prayed for us. We can definitely feel the prayers. To God be the glory for everything He has brought us through and for the miracle we are believing in (Katie to be healed).

**Katie is scheduled for surgery tomorrow to put her central line back in and then chemo will be on Saturday and Sunday.

Good Times...NO...Great Times

Today has been WONDERFUL. Katie spent the morning laying in bed watching PBS, and singing to herself/her toys. And I got a little bit of a nap. This afternoon, Katie and I went for a walk up to the 16th floor to do laundry and play in the library. Katie had fun putting puzzles together in the library. She saw another little boy and commented that he had an IV too. Then she proceeded to tell him about her IVs and how a central line was better. Then the two of them showed their battle scars (he had had heart surgery). It was so much fun to see her talking to another kid, laughing, and having fun. Now...as soon as the nurse brings us a bucket we are going to do a craft...did I mention with glitter! LOL The glitter strikes again! Those blasted Radio Lollipop people... =) But to tell the truth we have a lot of fun with glitter....and pink buckets make it manageable. William will be here tonight so the posts for the rest of the week will be from him. Pray that he doesn't cause too much raucous while he is here...he isn't as polite as I am **wink**

Quiet

Today has been pretty good. We didn't have too many interruptions during the night and we slept well. Katie's cultures continue to be negative. They are planning to put the central line back in on Thursday. Then they can do chemotherapy on Friday and Saturday. Hopefully we can go home on Sunday or Monday. She doesn't have to have any more 'pokies' right now. Katie of course is happy about that. She is also excited to get to see her daddy tomorrow. He is going to take my place for a couple of days. Katie can have daddy time and Laura Beth can have some much needed mommy time. It should be good for all. Of course I will miss my little spitfire but I know she is in good hands.

Good Morning

Today has been going pretty smoothly...I am surprised to say I did not realize it is almost 10:30 until now...LOL. I almost killed me some residents this morning. First one came in about 4 to find out if they took out her central line (DO YOU READ CHARTS????) and then one came in about 6 or so to examine her and left the light on when she left....But all in all we are doing okay. Katie had to get blood drawn and she was not too excited about that....but it was quick and she didn't cry much. Thank you all for your prayers...William went home yesterday to go to work and I will probably go home on Thursday while he stays up here for a couple of days so that I can work (he is off from work on Thursday and Friday)....maybe no one will get killed while he is here by himself...who knows =)

Ninth Floor...Hooray

Katie had surgery to remove her central line at about 1:15 (only 3 hours after they said it would take place.) She now has two IVs in her left arm. We should be here until AT LEAST September 1. We are now on the ninth floor (room 934).

Update

Katie is suppose to have surgery about 10 this morning to remove the central line. After that we should be able to go to a room on the ninth floor (there are 5 empty rooms up there!) Please pray that everything goes well. They will put in another IV while she is under so that she won't feel it when they put it in. Thank you.

Hmmmm....

Well we now have a name...the bacteria is called Acinetobacter Baumanni. Apparently is relatively resistant to most antibiotics. The infection control doctors are suppose to come by later today. That is about all I know. The woman that they sent in to tell us what the bacteria was called didn't know anything but the name... We have had a good day. William's parents came by today with the baby. The hospital was not sure about having Laura Beth go back to see her sister. BUT after some firm words from William, she did indeed get to see her. Laura Beth brightened right up when she saw Katie and began to jabber away. Katie was getting tired by this time so she wasn't much for conversation but I know she enjoyed seeing Laura Beth as much as I did. I will let you know more as I get updates from the doctors. Thank you again for your prayers and generosity. One of the biggest good things that has come out of this whole ordeal is truly seeing God's love and generosity come through all of you. May God bless all of you 100 fold for all of your kindness.

Progress....

Katie is now off of ALL the blood pressure medications and is holding her own. She doesn't have a fever and hasn't had one for a while. Her culture from yesterday is still negative. We will be in the PICU for at least 24 hours after she came off of the blood pressure medications. (Please pray a room becomes available on the NINTH floor when we are cleared to go). They do not think, at this time, that they will have to take out her central line. BUT if they do, they will remove the central line and then THREE days later put a new one in. They stated that if she requires IV antibiotics we will be here for 2 weeks from yesterday! Please continue to keep us in your prayers. Thanks...

Prayers Work

Just a quick note...Your prayers worked; We just got a call that we now have a room at the Ronald McDonald House. They have gone down on the dopamine (she is now at half where she was when she started.) She is feeling better. Katie has been sitting up and putting together a puzzle with her daddy and now she is whining because I am typing and she wants to play a computer game. AND she is saying she misses her sister...this is good news since it usually the dog she misses first! LOL...thank you for your supportive calls and prayers...a special thanks to Donna Shannon's daughter who offered us a hotel room. You guys are great.

Frustration and YELLING

Well Katie is doing better. But William and I are not...we did not get a room for the Ronald McDonald House tonight. William hasn't take a shower today and did not get a nap...so to say the least there was some yelling. The lady at the desk said that if you get a room the night before that you are put at the bottom of the list for getting a room the next night. BUT she did say she will check with them at 10 to see if someone cancelled or did not pick up their key and then we might get a room. We are the only one on the waiting list right now for a room from the PICU. Please pray we get a room...though we don't deserve one I am sure after the way I just acted....but when we are tired or upset WE are NOT nice people...

Some good news

We got a little bit of good news today. Katie's cultures that they took today came back negative for growth. The doctor said we need to have three negative cultures in a row to be completely out of the woods. Katie has been cleared to eat if she wants to (but she does NOT want to eat right now because she is scared to throw up again). The central line will probably not have to be changed. Katie is completely off one of the blood pressure medications (norepinephrine), and they are working on getting her off of the other one. Katie is doing pretty well considering everything she has gone through. Christa and I were able to get some sleep last night. The Ronald McDonald house and all who volunteer there are true blessing from God. Thank you to all of you for everything you have done for our family. Please continue to pray for Katie as well Laura Beth. Laura Beth is not sick but she has been tossed around a lot. I am sure she feels like we have orphaned her. Just pray she understands that we love her and wish we could be there with her.

PICU Update #2

Katie made it through the night okay. They have turned down the blood pressure medication twice now. This means that her body is trying to do it on its own. Her heart rate has come down to about normal. She continues to need oxygen but is doing okay. She is cranky and that is a good sign! It means she is ready to 'blow this pop stand'

PICU Update

They have told us that one of the cultures that they took grew a gram negative cocci/bacillus. They believe that her central line is where the bacteria started. Gram negative cocci/bacillus hits hard and fast and is hard to treat. They are treating Katie with heavy duty antibiotics and will continue to take cultures daily. Her vitals have stabilized with medication. They have told us we will be here atleast a week. Thank you for your prayers.

Déjà vu

First, I would like to say thank you to all of you who are praying for us. It means the world to me and William. Next, I would like to update you. Katie is in PICU room 29 (same one we had about a month and a half ago when we had surgery!) She has been given TONS of fluids (saline, red blood cells, platelets, plasma, etc.). She is on dopamine and epinephrine to stabilize her blood pressure. They had to start an IV (twice) and an arterial line to give them more ways to access her to give fluids and to monitor blood pressure. They have also started her on antibiotics as they think that this is the result of some kind of bacteria. They have run just about every test imaginable at least twice...still they have no answers BUT she is stable at the moment (Heart rate is now 138 (normal is about 100); Oxygen saturation on room air is 95% and her blood pressure is about 100/48 which is about normal for her). They have told us we will probably be at TCH about a week...who knows if we get stable in time for chemo we might not even get to leave before starting the fifth round! Yea...go us :/ Hopefully we will not have to be in PICU a week...we might go crazy...correction we would have to go backward to be able to get back to crazy!!! We have already passed it twice... LOL Thank you for all of your prayers.

PRAY

Yesterday was a great day...It started off rocky but we had a good time at St. Joesph's hospital getting blood and platelets. William and I both went, so I was able to sneak away to see some of my friends from BVRC. It was a very needed respite. Today, however, has not been so great. Katie had a great day at grandma's today. But at 9:30 tonight she woke up throwing up. Her fever quickly spiked to almost 103. So off to Houston we go. We got here about midnight or so. Her blood pressure has dropped pretty low and her heart rate is high. Several of her blood chemicals are outa whack. They have now admitted us to PICU. I will update as I can.

Roller Coaster

Today has been a crazy roller coaster of emotions...scared, happy, upset, and downright broken. I found out this morning that Katie's platelets and hemoglobin had dropped significantly and that she required a transfusion of both. Thankfully aunt Karla and grandma were able to take her into Bryan to the hospital to get a sample of her blood to be typed and cross matched. (That way neither William or I had to take off work.) Then I got a call that the preliminary results of the bone marrow biopsy/scan show that Katie still has cancer in her bone marrow. This, of course, is very upsetting. We will get more definite results later in the week. We should go for Katie's 5th round of chemotherapy sometime around the first week of September. After I finished work I got a call that it would be at least 8 before the blood and platelets would be in Bryan....and then about 8 I got a call that they would not be there until after 11 tonight. So...we are going to go to Bryan early in the morning and get the process started...please pray for Katie, as she has a very low immune system, is anemic, and of course bruises very easily right now (and she is at risk for internal bleeding). Thank you for your prayers...they are what we hold onto right now.

Hello God...it is me margret... (a teen book title that reminds me of my life LOL)

Today has been one glorious roller coaster. I have to be honest and say that I was not a nice person today. We arrived at the clinical care center at 7:30 (10 minutes before our appointment time). When we got there we let the share desk know that we had an appointment with the radiation oncologist down the street at 9. The receptionist laughed and said 'there is no way you can make that appointment. Just because you have an 8 o'clock with the lab does not mean that you will get in at 8.' Of course our response is 'why do you even make appointments if you can't keep them and are already behind at EIGHT in the MORNING?' Of course they did not have an answer BUT we did get taken back fairly quickly. By the time we got to see the nurse practitioner it was about 8:30. When she walked in, her first statement was "Don't worry about the radiation oncologist, I already called and cancelled your appointment." Apparently, even though Dr. Russell referred us there (without letting us know) and they made the appointment we did not YET need to see them...and the nurse practitioner did not feel that I could make that decision myself so she cancelled it for me. To say the least I wasn't too happy. After looking Katie over she cleared her to go get her bone marrow aspirate/biopsy completed. Her hemoglobin was 8.4 (they transfuse at 8 or below). I requested that we get transfused since we were already there AND we know it is going to keep going down. She agreed and we went to the waiting area for the bone marrow procedure. THEN she called my cell phone and said that "we decided it would be best if we waited to see if her counts come up on their own and if not then you can transfuse on Monday." Of course she added that they didn't have room to do a blood transfusion anyway. So this of course added to my frustration. We were taken back about 10:30 or so and Katie got her bone marrow procedure completed (by the way we were the FIRST to have the procedure done even though they open at 9 and it was 10:30 AND this is the best they had done all week in starting EARLY according to the nurse that took us back.) Everything went well with the procedure and Katie woke up fine. We are now home and hope to be until at least Tuesday.

Thank you for listening to all my ranting and raving...please pray that Katie's marrow is clear.

Today...

I'm sorry that I have not posted in a while...I do not have internet at home...and I was so excited to go home on Sunday that I forgot to post about going home. We came home on Sunday August 9th. Katie has been doing good since coming home. She continues to be tired and lose some weight but that is to be expected. Today she is having a bone marrow biopsy/aspiration completed. Our prayer is that her bone marrow is CLEAR! We were suppose to see the radiation oncologist BUT they changed that because even though we had an appointment for the bone marrow at 1:30 they said that it is first come first serve...who knows around here...Katie's hemoglobin was just above the level to transfuse but we have opted to get her a blood transfusion today so that maybe her energy level will go back up and we will not have to mess with it this weekend. Thank you for all of your prayers.

Day before going HOME

Today has been a good day. Katie woke up about 9 and played educational games on the computer for about 2-3 hours while I took a morning nap. William came today and brought dumplings! (Thank you to Jan Moore...they are GOOD) We played in the playroom for a while and then Katie rode in a pink car back to the room. She has thrown up once today but hopefully the medicine will help that. They just started her last dose of chemo before we get to go home.

Another Good Day

Today has been pretty good. Katie has been kinda puny...and has thrown up a couple of times. But all in all it has been an okay day. She continues to eat some even though she is nauseous. To her father's credit she did eat about half a small container of bean dip with Frito's! Please continue to pray for her bone marrow to be clear when we go in for a bone marrow biopsy/aspiration on August 14th.

***Also please pray for a little boy, Leonard, who is currently in at Texas Children's Hospital for a lung infection (he has cystic fibrosis). Like us, he has to be in the hospital frequently...and as we all know that is not fun for him or his mom. Please pray for peace for his mom and healing for Leonard. Thanks ***

Bible Verse for Today:
1 Thessalonians 5:16-18 (New International Version)
"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."

Quiet Times

Today has been pretty good. No huge meltdowns...only small minor ones. Katie had alot of fun today playing on the computer for about 2 hours (thank goodness for working internet service), Nana came by for a while, we did NOT have any allergic reaction to the chemo today, and she got to paint with one of the "Child Life" people. Now she is sleeping peacefully while the 6 hour chemo is going. All in all a good day. Thank you for all of your prayers and well wishes. We love you guys. =)

Day 3 of Round 4

Sorry that I have not posted in a little bit BUT our internet has been down here at the hospital. Katie and I are doing really good. Since they took the dexamethasone off of her plan of care she has NOT had any more episodes of screaming. She did well with the first round of IV etoposide (no anaphalatic shock or cardiac arrest...that is always good!) Katie has not even thrown up yet (knock on wood)...thank you for all of your prayers and love. We really appreciate them.

Good Morning

We made it through the night okay...once we calmed down. After about 30 minutes she fell asleep. BUT then the phone rang and she woke up and screamed even worse for about an hour or so. In addition to her meltdown, she was seeing things move that were not moving, and scratching her nose like crazy. When the entourage of doctors come in today I am going to get them to remove dexamethasone from Katie's plan of care! Anyway, we are doing good this morning and hope to continue to do so. Thank you for your prayers. They helped me to not kill my child last night...literally.

WOW...

We were having a really good day. Katie and I have colored pictures, watched TV, played 'go fish', watched a puppet show, made a puppet, and made an elephant with glitter. And all of that is just since William left and they began the chemotherapy. BUT you notice I said we were having a good day. Right now I am listening to her scream at the TOP of her lungs in what I would call a FULL FLEDGE COMPLETE BREAKDOWN MELTDOWN...and this has been going on for about 30 minutes. She is tired (got up at 5 and has not had a nap), upset because we are back at the hospital, and the dexamethasone (steroid that is suppose to help with the nausea that the chemotherapy causes) is really working on her! But good gracious....please pray for peace and a good night's rest. Thanks.

And we are OFF...

We have gotten into the room. =) William has left to go home in hopes of missing some of the traffic. And they have now begun her chemotherapy. She will get it from 4:30 to 10:30 tonight. Tomorrow she will get the etoposide from 3:30-4:30 and then the cisplatin from 4:30-10:30. Right now she is very tired...I have put in Lion King 2 and she is laying down in her bed to watch it. Hopefully she can get some rest and stop being so cranky. =/

***Also please keep little Layla in your prayers. She is also in the hospital. However, she is having some problems with water retention.

Better Days Ahead

Yesterday was a perfectly AWFUL day. Work stunk...I washed my cell phone and keys (ruined the cell phone), found out sonic where I get my daily coffee will no longer be serving lattes, washed a pen in with my favorite jacket and got an ink stain on it...to say the least it was an awful day...BUT today has been much better. We found out that Katie has met the criteria to have the etoposide (oral chemotherapy medicine) through her IV. That helps ALOT because she hates to take it by mouth. And we are going to get a room (908) this afternoon. They are cleaning it now. This in itself is amazing since it usually takes about 12 hours after we see the oncologist to get a room (that would have made it about 11 tonight). Anyway thank you for all of your prayers. Katie and I will be here until Sunday. William and Laura Beth will be at home and come pick us up when it is time to go. The oncologist reports that IV etopside is harder, as far as side effects, than previous chemotherapies. So please keep Katie in your prayers for good health. And pray that her bone marrow is clear when it gets tested again on Friday August 14th.

Birthday Party..

Today we had Laura Beth's birthday party. She had a blast with the cake! Not like Katie when she turned a year old...you had to practically smear it on Katie for her to get dirty. But Laura Beth dug right in! In fact she had to have TWO baths today and really needed a third. Katie loved getting to make the birthday cake. She picked out a strawberry cake with sprinkles on the icing. She was able to walk down to grandma's all by herself to get some applesauce for the cake, and was so proud of herself. For the most part the girls were in a good mood. Laura Beth even walked using the stroller/walker my parents got her. She loved it! The girls were tired though and got cranky really fast. I think Laura Beth is teething and Katie just gets tired easily (and neither got their nap out). But all in all we had a great day with family.